Tag Archives: nicu

the eric update: so. who’s picking up the tab?

with a little help from friends

as soon as you set foot into the emergency room, the meter starts running. well, actually, if you take an ambulance, the meter starts running before you step into the emergency room, which is why we drove to the ER, since i didn’t want to have to pay a $700 ambulance bill that the insurance company would deem unnecessary ( at the time, we obviously didn’t realize just how necessary it could have been ). amusingly, when we first arrived at the the first hospital we realized that, cleverly, we had both left our insurance cards at home. and throughout the first couple of hours, i would wonder if there some sort of obscure loophole with our insurer that would allow them to deny coverage because we hadn’t given them the card immediately.

throughout the first few days, we would find ourselves thinking ( or more correctly, trying not to think ) about how stupendously expensive the whole process was going to be , whether or not st. mary’s was in our “network” since we transferred from an “in network” hospital and didn’t know a thing about our new hospital, or even whether or not any of our doctors were “covered”. most importantly, we also didn’t know if we had an “out of pocket maximum” with our current insurance plan. about the only thing we did know for sure was that kris has enrolled in a special maternity plan that changed our coverage from 75% to 90%, but only for care provided by “in network” doctors at covered facilities. at one point, right before kris was getting wheeled into the operating room, i remember her exclaiming “you better check and see if our insurance is going to pay for this!”

on the second day at the nicu, our new family counselor gave us a form and told us that we were lucky to live in a state with a loophole in the state medicaid law that allows anyone, regardless of income, to qualify for medicaid reimbursement for “some” of the bills ( note the use of the suspiciously vague word, “some” ), if patient is in intensive care for more than 30 days ( i believe that the loophole is the result of AARP lobbying muscle and was initially intended to cover elderly patients, and micropreemies get to take advantage of poor legislative language ). “trust me,” she said. “his bill for 3 months in the nicu will likely be over $200,000, and you don’t want that bill, so be sure to fill out this form and get it submitted.” kris and i exchanged glances and blurted out, “two hundred thousand dollars!”, as we simultaneously did the mental math about how much we’d owe after insurance paid their piece and if medicaid paid nothing.

in addition to the medicaid loophole, we would also discovered that there is a separate program which used to be called, very politically incorrectly – the crippled children’s program – but which is now supposed to be referred to as “childrens’s special health care services” (CHSCS). they must have changed the name recently because nobody calls it CHSCS, as it’s simply called “crippled children’s”, as in “don’t forget to fill out your paperwork for crippled children’s”. in any case, CHSCS is a form of supplemental insurance for the specialist care that eric may or may not need after he gets home ( i.e. speech therapy, physical therapy etc. etc ). the first year is free and then i believe we would need to pay a premium if we decide we want to stay enrolled.

so that’s the context we had over the first few weeks we knew we had a good chance of getting something paid by someone, but still didn’t know any specifics of how much our insurer was going to cover because we weren’t at a covered hospital and i imagined that the insurance companies probably had complicated rules associated with payments for referral services. but kris and i did what we do best on occasion and procrastinated on getting any specifics because; a. there wasn’t anything we could do to change the situation and b. hearing that we weren’t covered and medicaid would only pick up half the bill was not something we could conceptually handle at that particular time. in other words, we were engaging in some good, old fashioned, denial and avoidance behaviors.

a few days after we learned about CHSCS but before we leaned any specifics about our insurance coverage, i was chatting with a nurse about The Bill and insurance and how it was nice to at least have the prospect of getting money from a few sources to help defray costs. “oh yeah.” she said. “because his bill will run, hmmmmm, let me see. i’d guess that he’ll probably have a bill of $1 Million Dollars. maybe more.” if i hadn’t been sitting down, i probably would have fallen over as i heard “One MILLION DOLLARS!” bouncing around my head in what sounded like a dr. evil’s voice.

so, it would seem that the family counselor had already done the math, knowing that we had insurance, coverage and was telling us the number that most people could get saddled with after insurance pays their cut ( and note that this number doesn’t include kris’ care). no wonder she kept pestering us to get the medicaid paperwork submitted as quickly as possible. suddenly, getting specifics seemed a whole lot more important because i was fairly certain that i wasn’t going to be sleeping any better, if i had to think about paying a two hundred thousand dollar nicu bill.

it took a frustratingly long time to get the answers, but it turns out that we will may not have to pay one red cent for his care. our insurer will pay 90% of his nicu bills ( it turns out that st. mary’s is “in network” after all ) and 75% of the cost of his neonatologist bills ( weirdly, his visits by the neonatologist are not considered part of his nicu care ( even though the visits are done in the nicu) and he’s not an “in network” doctor ( even though he’s at st. mary’s with is an “in network” facility. easy to follow, huh. ), so we get the “out of network” coverage rate, which turns out to be 75%. of course, the number left over is still a hefty one, but the fine people that answer questions about my healthcare plan have told us verbally that we have a $2,500 “out of pocket maximum” and that’s not going to change. and we can submit the $2,500 to medicaid and the person who does hospital billing said that they would likely pay every last bit of it. in fact, according to the hospital billing department, medicaid will pay nearly all of the difference between our “out of pocket maximum” and the percentage paid for by our healthcare plan. what medicaid doesn’t pay, she casually explained, they write off. so, even if i were to lose my healthcare coverage, it sounds as if medicaid will pay the bill.

having heard the horror stories of the bills that families have when they leave the nicu, we feel a little guilty that we will probably not have to worry about it. we know we’re tremendously lucky to have a great healthcare plan ( incidentally, my fantastic insurance is provided motorola who owns the plan but contracts it out to humana. motorola has always been, and continues to be, the kind of company that encourages healthy, happy employees – they even encourage breastfeeding by making it very clear that they will subsidize a breastpump! go moto! ) and live in a state that will foot the bill, even if we didn’t have such fantastic healthcare. ironically, in this sense, we’re “fortunate” that he was a micropreem and will be guaranteed to stay in the nicu for much longer than 30 days.

in some strange, conflicted way, it’s hard to not feel sad for the parents of the preemie “multiples” who are relatively healthy and stay for under a month, as they will leave with a hefty chunk of a bill, even if they have fabulous insurance ( obviously they don’t give two or three for one offers in the nicu). if i had to guess, i’d bet that they often end up with bills between a hundred and two hundred thousand dollars, which would be frightening to contemplate paying as you’re trying to think about how to how to feed and cloths two or three new babies.

hopefully nobody will comment about how i’ve missed a small detail and will actually owe One MILLION DOLLARS!.

meta: obviously this post is quite a bit longer than the others. of course, i’ve been working on it for awhile and didn’t write it all today. i do have other things to do 🙂

the eric update – day 29: more postcards! and blue moon birthdays?

day 29: more postcards!

i like the fact that the most exciting thing to report today was that we got a bunch more postcards in the mail! woohooo! and my family should be ashamed for allowing complete strangers from all over the world to get eric’s postcard in the mail before they did ( actually my sister candy did get her postcard in the mail fast, but not faster than somebody in santa clarita, california ). thanks again ( and i’m just kidding about the family comments. maybe. 🙂 ) – perhaps the next two and a half months can simply be daily shots of his new postcards. perhaps i can find a way to help you all visualize where they are coming from, with a webified map of the world and a link to a scan of the postcard. see, isn’t that much more interesting than knowing that eric is doing so great that they’re going to experiment with putting him on the nasal cannula all day today? i don’t suspect that he’ll be off the cpap forever, but he does enjoy proving everyone wrong, so who knows.

it occured to me today that some of you might consider august 4th to be his one month “birthday”, at which point i thought it was funny that kris and i both consider yesterday to be his one month birthday, since it was 4 weeks after all and with micropreems gestational milestones are often measured in weeks ( 32 weeks for a suckling reflex, etc ), so it’s just easier to keep a record of weeks, rather than gregorian months; and that’s why we’re going to make it difficult on everyone and keep following a lunar calendar month instead of a “regular” calendar month.

curously, as we were talking about moons, lunar calendars and marking off gestational ages ( of course, you all know that the menstrual cycle is a 28 day cycle too), both of us remembered that it was a full moon yesterday. or something quite close to a full moon. which means it was a full moon on the fourth of july! and, of course, it’ll be a full moon in 28 more days on his second month birthday. neat. i wonder if there’s a link between preeclampsia and full moons joking. mostly. sort-of.. you’d think that he’d also have a full moon on his first “real” birthday, but that doesn’t seem to be the case, if the lunar calendar i linked to is to be trusted.

conspiracy theorists might think we planned this all out ahead of time, given that the full moon features so prominantly in the norse creation myths ( i’d guess that the full moon probably is a common thing to talk about in all creation myths ) and that we decided to call him odin. but remember, i’m an adherent to littleton’s law and the power of a good story. most of the time.

in any case, eric’s monthly “birthdays” will henceforth be officially observed every 28 days until further notice ( at least until we stop paying such close attention to weeks and “age adjusted” milestones ), so double check and make sure we’re celebrating on the same day!

update: some good news and some not-so-good-news-that-isn’t-horrible. first, eric is packing on the weight. he gained more than two ounces today and weighed in at 1 pound 15.3 ounces! amazing! he will most assuredly hit the two pound milestone in the next day or so. w00t!

also, he did have to go back on cpap this evening and the nurses noticed that one of his lungs sounded like it was not expanding and contracting as it should be; they weren’t overly concerned about it, but they are going to give him a chest x-ray tommorrow to make sure there isn’t anything bad happening. there are innumerable, innocent reasons for why his lung might not be acting as it should, and a couple of bad reasons that they want to rule out. so we’ll be hoping for the best over the next 24 hours.

there’s also a small chance that he might be developing a hernia. or maybe his testicle is descending ( i’m not kidding, they really can’t tell it’s a hernia or a descending testicle). a hernia would be not-so-good since he would need surgery which would necessitate him getting transferred to a different facility in town. and we really like his current nicu, so hopefully it’s not a hernia.

aaaaaaaand. on our nightly dog walk, we were telling the “full moon” story to a neighbor and they commented that they thought that the recent full moon was a “blue moon”! however, upon futher investigation, it looks like eric’s “lunar birthday” is just shy of the full moon, blue moon or otherwise. so conspiracy theorists can rest easy.

the eric update – day 28: eric’s four week birthday!

day 28: new bedding!

maybe i’ll have to stop making “the eric update” if things keep continuing like today. he had the quietest, most serene day he’s had yet today. he’s on 6 hours of the nasal cannula and 2 hours of the CPAP, which means that he’ll probably be off the CPAP soon; his bloody goo is improving and they are suctioning his less often. while he’s alarming at a slightly higher rate than previously ( 10-15 “a’s” and “b’s” a day ), their quality is changing, as they are becoming more “shallow” and he’s beginning to recover from some of them all by himself, so even though the number of alarms are higher, the staff are less concerned about them. and he’s getting more food – 7 cc’s of breastmilk an hour, which leads to the really, really big news; he’s up to 1 pound 13 ounces! i think, barring any downturns, that he’ll hit the 2 pound mark sometime this week, which will be very exciting. it’s staggering to think that he’s gained nearly a half a pound in the last month.

day 28: ho hum.

late in the night, they put him in his new bedding that we received the other day from a stranger and he loves it! his new bedding helps give his that “bundled” feeling which simulates a womb-like environment. the nurses kept commenting on how neat it was that somebody sent us the bedding because micropreems really enjoy it, which makes you wonder why somebody doesn’t mass market the bedding.

day 28: 4 week weigh in.

1 pound, 13 ounces! w00t! in 4 weeks he’s gained 6 ounces.

day 28: contour and mottle

contoured back hair and mottled skin. mottling can be indicative that he’s “sensitized”, which means one should be careful about how much sensory input he recieves ( i.e. talk but don’t touch him or touch but don’t talk ).

day 28: on his stomach.

he’s 4 weeks old. and he likes being on his stomach.

the band-aid on how foot is new. i wonder where that came from.

day 28: alien?

don’t even think that he looks like an alien.

the eric update – day 27: the ho-hums

day 27: ponderous

we spent a lot of time at the nicu today, just keeping an eye on eric. he’s had a few more “a’s” and “b’s” than normal over that past few days and his oxygen levels have been turned up ( room air is about 20% oxygen and after a long stint of not having any supplemental oxygen, he’s getting anywhere between 25 and 30%. the bloody goo problems are continuing and it’s raising the background level of anxiety as we’re spending more time tapping his butt or rubbing his back to try and get him to breath. we discussed things with his nurse practitioner and from her perspective he’s still doing really, really fantastic. and concurred with kris’ observation that the bloody goo problems and the cpap mask are part of a vicious circle. the air in the cpap mask dries out his throat and the suction catheter makes the irritated parts bleed. it just comes with the territory. here’s to hoping it doesn’t continue for too much longer, because at this rate he’s not going to want anyone to touch every touch his nose after he gets out for a very, very long time.

day 27: four 0'clock prep time

we also didn’t get much ‘roo time in today as the only chair that fully reclines was in use and if we try to do the ‘roo while sitting upright, we find that his neck muscles can’t keep his head in the rights positions to get him a steady supply of air. so instead, we just hung around his bed and kept him company.

kris talks with eric a nurse beth does her regularly scheduled nasty things to him. he’s moving his head around looking at all of us as kris talks to him and holds his hand.

he’s just had his cpap mask taken off and you can how the cpap regime makes his eyes red and swollen. this time it’s not too bad, but sometimes it looks quite uncomfortable. he’s on the cpap mask for 4 hours and the nasal cannula for 4 hours. hopefully soon, he’ll be off the mask entirely.

[ update: much later in the day ( o.k. maybe it was technically early, early the following day, i did get to hold him for awhile; the nicu was abuzz with reports of a possible ’22 weeker’ being admitted, but as our nurse said, everyone is hoping that they can delay the birth, since – as she put it – “22 weeks is not really, well, compatible with life.” it’s odd to look at eric and know that there’s just two short weeks between their birth gestational ages. a lot of biology must happen in those two weeks. ]

day 27: ears and gray hair

while i normally hate pictures of myself, and would typically despise pictures that featured by ear prominantly, i think i’ll make an exception with this one. there’s something i like about the composition of the ears and my hairy head with his not-so-hairy one.

and i i can blame all my gray hair on eric. see, it’s not that i’m old – people with black hair go gray prematurely. and having a 24 weeker doesn’t help the situation.

glad i cleaned my ears that morning. and no, that’s not a mullet. honest.

day 27: the cpap machine

with all the commentary about it, i realized that i hadn’t taken a photo of the cpap machinery. it looks innocuous, no?

i don’t think you understand just how difficult it is to take an interesting shot of a cpap respirator.

day 27: eyes on you

he’s on his belly, but that doesn’t mean he doesnt want to look at you.

the eric update – day 26: beating the wrap. more bloody goo. and personalized snugglies.

day 26: doing "the swim"

today, eric took one of those teeny, little micropreemie steps that gets him one step closer to being released. he finally beat the wrap! literally. in other words they don’t have to cover his bed in plastic wrap to help keep his body temperature stable. it’s a big deal for a micropreem to be able to maintain his or her own temperature ( in fact it’s one of the release criteria ) and while he can’t do it all on his own, he’s making great progress.

he’s threw more “a’s” ( apneas or stopping breathing ) and “b’s” ( bradycardia or stopping breathing ) today than usual, almost all of them due to mucus and goo collecting in his nasal passages and throat. the nurses joke that eric is “slimy”. it’s not super unusual, but the downside is that they can only get the gunk out by thrusting a tube into his nose and suctioning it out. as i’ve noted before, he doesn’t like it at all and the downside is that you can imagine that the suction tube irritates his passages and he’s getting a bit more blood in the stuff they are suctioning out. it’s one of those things that’s “normal”, but that gets harder and harder to watch day in and day out. and bloody nasal passages seem like nice little areas for infections to grow, so kris and i spend a lot of time just wishing he’d be a little less slimy.

day 26: personalized snugglies

in addition to postcards, eric is receiving surprise gifts! a friend of a friend of a friend who had twins that graduated from the other nicu in town sent us custom bedding! they were hand made by a nicu doctor and they kept her twins bundled; if you look down in the lower left corner you can see that she even stiched “snowdeal” on the bedding so it doesn’t get lost in the laundry.

dang. that’s some serious kindness from a stranger.

the bedding is reversed so i could get the stitched name in the shot with him. you might notice the cloth straps which are used to really give him a bundled feeling. micropreems get distressed at the sudden lack of boundaries and really like feeling things pressing around them which they lost when they were suddenly taken out of the womb.

jeanne, thank you.

earth angel

a family member bought eric a little angel with his name on it a day or two into his stay at the nicu. for some reason, it kept falling off the stand on his radiant warming bed which would lead to endless “fallen angel” and “the angel fell down on the job” jokes from the staff. somebody came up with the idea of putting it in a plastic bag and hanging it over the edge of a stand on the bed.

for some reason it makes me chuckle whenever i see it.

the eric update – day 25: a tantrum and a little perspective.

day 25: the tantrum I.

with eric IV looking quite content much of the time ( except, of course, when his care routine requires that not-so-fun things are done to him ), i found myself wondering when he was having those tantrums that preemies are famous for. sure, he can get worked up sometimes, clenching his fists and thrusting his feet and making little squeaks. but i we’ve never seen a full-blown, let-out-all-the-stops tantrum. not that you want to see a tantrum, but still. and so, with perfect timing, soon after i arrived this evening, eric decided that something was not right ( of course, it couldn’t have been my voice. no, certainly it wasn’t that ) and started trying to launch himself right out of the bed. and the screaming. if there was any doubt, him pipes are developing well. this went on for about a minute and no amount of consolation from me or kris was helping one iota.

day 25: the tantrum II.

that’s when nurse jan decided it was time to bring in the passifier, because if he has a tantrum for too long then he’ll stop breathing and that’s no good.

day 25:  big hand.  little hand.

the only problem is that he doesn’t really know how to suck on the passifier and breath at the same time, so it’s a delicate balance. eventually, he figures it out and i rest my hand on him, which helps a little too, i guess.

day 25:  postcards

the postcards have started coming in! i’m not sure the nurses believed me when i told them that he was going to start getting cards from all over the world. we’ve just received a few so far, but is suspect they’ll be trickling in for awhile. we were very touched by the kind story from a nice person we don’t know who hails from santa clarita, california. it’s going to be hard to maintain my cynical side if people keep up with such random acts of kindness.

day 25: more 'roo

kris is continuing with her record setting ‘roo sessions. she might do two sessions a day at about 2 or 3 hours apiece ( i bet she’d go longer, but that’s the longest she can go before she has to “pump” ). as i said yesterday, there are many factors involved in how well eric is doing, but i really think all the kangaroo care is big factor. we’re fantastically fortunate that kris can spend so much time in the nicu. she teaches at the local college and has the summer off, so she can spend as much time as she likes with eric. and of course, she likes to spend a lot of time with him ( not that i don’t, silly. you know what i mean. ).

day 25: bearer of the ring

ahhhhhh. it’s the ol’, “put your wedding ring on his diaper to give a sense of perspective” trick. with all the close-ups, it’s easy to forget just how small he still remains ( although he has grown 3.5 inches centimeters ( arrgggh. there’s a big difference between inches in centimeters. i think 3.5 cm is a little over an inch. ) since birth. yeah!).

the eric update – day 24: by the light of the radiant warmer.

day 24:  YAPOETIE

eric’s making it all look so easy. he’s on 6 cc’s an hour of breastmilk and they aren’t pulling out any undigested fluid from his stomach so his digestive track appears to be working well. i forgot to mention that he’s begun pooping on his own. for the first few weeks they had to help out him out by giving what must have been a very small suppository, but i think he’s pooping all by himself now. sniff. they grow up so fast. not much change in his “orders” other than they’ve officially moved him to 4 hours of CPAP and 4 hours of the nasal cannula. and he’s in room air with no supplemental ‘oooohs’ ( oxygen ). at this rate i suspect he’ll be on the cannula full-time quite soon, which is yet another great step forward.

i don’t get to spend as much time in the nicu these days, but kris is on constant vigil and he had over 4 hours of kangaroo care with her, in addition to my paltry 1.5 hours. prayers and good thoughts, genetics and fantastic nicu care notwithstanding, i think that all the ‘roo time is having a trememdous impact on his overall health.

day 24: by the light of the radiant warmer I.

one of the sensory pleasures of the nicu is provided by the heating element that’s placed above him in his radiant warming bed. the heating element helps eric keep his body temperature in a normal range and it glows more or less brightly depending on how well eric is bundled and whether or not eric’s bed is enclosed in plastic wrap. if you’re taking pictures or reading or talking to eric, the heating element really kicks in and it can get uncomfortably hot. you might discover that if you’ve had no sleep on 20 cups of coffee and nothing but a slice of toast to get you through breakfast lunch and dinner that leaning under the radiant heating element might make you feel a little funny. so you might decide to bide time by taking a “mirror” shot while wondering how many mirror project submissions are from people looking at themselves looking at a radiant warmer. prolly not many.

day 24: by the light of the radiant warmer II.

this is what the radiant warmer looks like from eric’s perspective.

i guess since micropreemies like looking at patterns with lots of contrast that he just might find it appealing.

day 24: by the light of the radiant warmer III.

as you’re grasping the bed trying to maintain your stability, what with being baked under the radiant heating element and sweating caffeine, you realize that you’ve seen this caution message a thousand times while continually pondering what “insensible water loss” means. later, google will provide the answer as it usually does.